Let’s Talk About Me Feeling Better…..Part 1

 

Freedom by w.holcombe

Freedom
by w.holcombe

First, I want to say, I’m not cured of anything.  Nothing is gone completely.  I still have all my Meniere’s, and it’s symptoms.  I’m still deaf, with cochlear implants.  I still have Migraines.  I still have Cluster Headaches.  I’m still Bipolar. I still have Fructose Malabsorption.  I still have all of my chronic illnesses.  I am still disabled  I just don’t have some of the symptoms as severe as I did 3 months ago.  Truthfully, I am living a life that I didn’t think was imaginable 3 months ago, and in this series I’ll talk about some of the reasons I now think it is possible.

There have been a number of things that have contributed to me feeling better and I think it’s time that I laid them all out there for you.  I haven’t revealed everything before for a couple of reasons.  One, I was afraid it was temporary and I still am, 3 months is still a relatively short amount of time to tell if these things are going to continue to work, and two, one of the things is something that could be dangerous (and really may stop working at any time)….let me explain.

I will explain the dangerous one first.  This I wasn’t even sure I was going to talk about…but I think I should.

Remember how bad my headaches had gotten?  The migraines wouldn’t go away, after the Botox had been working so well and suddenly it stopped working?  I went for about 3 months of non-stop migraines.  It was horrible!!  I was put on steroids and had that severe vertigo attack and then was put on a different steroid to try to stop it….remember all that mess?  Then I started getting cluster headaches.  Remember?  If you are a new reader you won’t remember that, but it happened…and then…

by w. holcombe

by w. holcombe

One night I had a bad set of cluster headaches and didn’t wake up the next day until 2:30pm.  I woke up and my first thought was “OH NO! I haven’t taken my Diamox!”   Diamox is the medication I take to control the Idiopathic Intracranial Hypertension (high cerebral spinal fluid pressure ).  Without this medication I normally have an excruciating headache!  However, I suddenly realized, I didn’t have a headache.  For the first time in months, I didn’t have a headache.  Note: NORMALLY, when I don’t take this medication, I would be screaming from the pain in my head.  This day I did not have a headache.

I decided not to take it and see what happened.  No headache.  The next day.  No headache.  Days later, No headache.

Please forgive me for not telling you, but the reason I didn’t mention this before is because going off your medication without your doctor’s supervision can be very dangerous.  I should have called my doctor when I decided to stop taking the medication.  This could have been a medication that I needed to be go off slowly.  I could have harmed myself.  If you feel you are taking a medication you feel you need to come off of, please discuss this with your doctor before you stop taking it.  Do this under your doctor’s supervision.  I did not do this like I did. I was irresponsible.

I soon had an appointment with my neurologist, otherwise known as on here as my headache pain specialist, and I discussed this with her.  Luckily, I didn’t cause harm to myself, but she did say I should have called her and told her what I was doing, just in case.  The drug I was on is not one to play around with.  We aren’t exactly sure what happened.  It was evident that I needed the drug when I was put on it, I had a lumbar puncture to prove it and when I went on it I felt much better.  As I said earlier, normally if I didn’t take it I would have had a very bad headache.  We thought it would be silly to put me through another lumbar puncture just to prove I no longer needed it, as that was pretty evident.  The hypothesis is that somehow my pressure spiked, (perhaps I was lax in taking my medication…I’ve been known to do that before, especially if I have a vertigo attack, I can’t keep medication down, or I fall asleep from exhaustion and don’t take it….) and I had may have had a “blowout” causing my spinal fluid to drop.  I used to have that happen before, but the leaks would heal, the pressure would build back up and the whole thing would happen over again.  That’s why I was put on the medication, to try to stop that cycle.  This time the blowout may have cause a leak that didn’t heal, essentially causing my own “shunt” but without the surgery.  So now I don’t have to be on the medication.  Crazy, but that’s all we can think of???  Or maybe my body just regulated its self?  It doesn’t really matter, I now feel better without the medication.

This is probably the main reason my headaches are so much better.  Again, I still have headaches, both migraines and clusters.  The migraines are just much better than they were.  I can’t say that about the clusters because they didn’t start until right before this happened.  I don’t have a lot of these so far.  I’ve had more than I’d like, and I hope they don’t increase.

This could also have helped some of the vertigo, but I don’t know.  The only time my pressure changes really cause vertigo problems I have very severe vertigo attacks.  I have not been having the horrible vertigo attacks, the kind that where I spin for hours and lose all bodily functions, but I haven’t had those in a while.  I have been working hard to control those attacks.  That’s part of another thing I’ve changed…something I started changing before the whole medication things happened…but I wanted to tell you about this first.   So, to tell the truth, I really don’t know if this has helped the Meniere’s symptoms or not.  Mainly, I think it helped the horrible headaches.

Now there is a chance that eventually this leak may heal and my CSF pressure will once again build back up and I will have to go back on this medication.  I sincerely hope this is not the case.  The medication that is used for this, is not a friendly drug.  I hated it.  Side effects…ugh.  Again, another reason why I didn’t mention this, I knew there was a very real possibility that it would be a short lasting “fix”.  Now after 3 months, I’m a little more optimistic.

There are TWO other major things I changed that I believe have caused major life/health transformations.

One of is my Diet.   (This will be Part 2 of the Feeling Better Series)

One of is studying Mindfulness Based Stress Reduction…this is the best thing I’ve ever done for myself!  (This will be Part 3 of the Feeling Better Series)

 

 

 

 

 

 

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13 thoughts on “Let’s Talk About Me Feeling Better…..Part 1

    • Not really. the medicine did me a lot of good for a long time, it just so happened my body did something that made it unnecessary any longer. I’m happy that it happened, and hope it continues to do so. The fact is, there may come a time I need that medication again. I’m glad I figured out what was going on. This would have been a toughie to figure out. I don’t blame any of my doctors for not figuring it out, or putting me on the wrong medication.

      • Understood. I’m taking stuff now that is beginning to drive my kidney function down, as it did my wife’s, before the doctors caught it and took her off most of it. My Mom was given nearly four more years of life by a drug that didn’t work in it’s higher doses…and doctors have no idea why that cancer drug would have worked before—but it did!

  1. Here’s hoping that you won’t have to go back on that med. I wish doctors would do a review of the meds people take to see if there is a need for them or need for a change. But, patients also need to tell their docs of any changes and I don’t think that many do or they think a symptom may be because of something else, which is very common. My mom switched doctors who reviewed the list of pills she had to take. I think 9 pills, some more than once a day. The new doctor told her she didn’t need 4 of them anymore. Sometimes it seems like a pill happy society.

    I’m looking forward to parts 2 and 3.

    • i wrote a long reply to this and it didn’t post. ugh.
      I do wish doctors would talk with patients about meds more often, but they assume if the patient doesn’t say anything, all is good. Not all patients are as savy as we are. I go in and discuss my meds with my doctors often. I review them often.
      this was not because of that. This happened because my body did something weird. No one would have thought my body would have suddenly changed to not have high CSF. If I hadn’t accidentally not taken the medication that day, who knows how we would have found out it was causing headaches instead of helping. It would have been almost impossible I think, and it wouldn’t have been my doctors fault.

      I do think it is a pill happy society, but I also think it is part patient fault there. I think patients go in wanting a pill to fix things. Why change my diet if a pill can fix it?

      Doctors and patients need to work together to find solutions to health problems….hopefully, they can find more solutions that don’t include so many pills.

  2. I can totally understand why you didn’t want to say anything. Going off medications without talking to the doctor (I’ve done that, too) and then just plain not wanting to say it out loud or put it out there to the world out of fear you’d jinx it. I can hardly wait to read the next installment! So happy for you!!! 🙂

    • I wasn’t just afraid I’d jinx it, I was afraid I’d encourage others to go off of their medication without medical supervision.
      I am a little afraid it will return, but if it does I’ll deal with it, and I’ll be aware this could happen.

      I’m working on the next installment. Thank you, I still have my days, but so far, it’s nothing like it used to be!

  3. Wendy, You never jinx by sharing – no matter what the long term outcome! The body is a miraculous piece of equipment and someday humans will know how to help it self-regulate and heal. Meanwhile it’s hit or miss. So glad that right now it’s a hit for you!!!

    What fuel – food, thoughts, stressors is ultimately what makes the engine run. I’m looking forward to parts II and III.

    LOVE LOVE LOVE your art sketches!!!!!!!!!!!!!!!!!!!!

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